Beyond the numbers, what has touched me the most is reading the comments that people are leaving when they sign the petition. Some are general, and some are very specific. Across the province there are people in similar, precarious situations. Please visit the petition and read some of these comments. If you haven’t yet, please sign it and share it with friends and family.

I went through some of the local (Waterloo Region) comments and pulled out some of the most personal, passionate, and touching comments. I will share these here, without names attached. Perhaps with each one that touches you, you can ask another friend to sign the petition.

• My 5 year old son has been accepted and waiting for two years for SSAH, and we have been told that he will be older than 7 before he will get funding . As his medical needs grow, we will need more and more support, but it just isn’t there. Now that he’s aged out of the early intervention system and into the school system, the gaps are widening.
• Our little (name removed) was born at a disadvantage with both Down Syndrome and Hirschsprung’s Disease. Without support from our government, he will have a harder time being a fully functioning member of our community. From a purely financial perspective, this lack of investment costs our society much more in the long run. And from a human decency perspective, it’s just plain wrong. Please help make this right.
• I’m a parent of a special needs child; we’ve been on a wait list for years. This is unacceptable, early intervention is the key to long term benefits. Knowing she will, someday, be without funding for support is frightening!
• It is important for me because I have a family member who has a developmental disability and it is painful to see loved ones and families suffer because of not getting the life changing services. The wait lists are having such a huge impact on us and I demand that government seriously needs to do something about it.
• I have a special needs child that would not qualify for employment supports and needs 100% supervision.  I have no choice but to quit my job to stay home with her once she graduates from high school as the wait lists for programs appropriate to her needs are extensive.
• The government is expecting disabled adults to live with their parent indefinitely. In order to do this, they need financial support to have a meaningful life.
• I have two special needs children and do not have the ability to have them Retested….  we know that their diagnosis will not change so what is the point in having us do this… many of us have made the choice to be stay at home parents to support our kids, and if this happens we will not have to opportunity to continue this. How are we to be able to care for our kids, AND survive? Ask yourself what you would do if after years of working, your job is yanked out from under you, you have no training in the world, and so you have to sit and wait till you are told, yes after your 7 year wait period, we will agree nothing has changed…. DON’T DO THIS!!!!!!
• Our daughter is a disabled adult, who is barely able to cover the costs of living on ODSP. As you know, the waiting list for subsidized housing is years long, so she has no option but to pay full rent and expenses on this limited income. As well the waiting list for funded case workers is years long, and the Passports funding is the only way we can afford the support she needs to live and work part-time in the community. Please help us keep her a functioning and contributing part of society.
• Every person brings value to a community, and we hurt the community as a whole when a person’s basic needs go unmet. It seems to me that government funding is becoming more about structural and financial efficiency, and less about truly supporting the original needs that started the funding to begin with!
• Intellectual and physical disabilities are yet another vulnerable population who only want what everyone else wants, to belong and contribute to their community. Unlike many other people in this world, they have to depend on minimal social supports because of the lack of sense of belonging in the area of equitable jobs and equal pay. People with intellectual and physical disabilities are more than eager to foster a supportive community. In fact, they desire a supportive community more than those who can afford to live without funding. The decision in framing life according to the deserving and non-deserving poor law violates their Charter of Rights to life and freedom. It is not freedom when one has to take refuge on the heating grates of a city or find food from a dumpster; that is not the right to life to which the Charter was created. If you are not brought to compassion from mere humanity than by not fully supporting people with intellectual and developmental disabilities, you only further put Canada into financial despair. Research proves that it is more cost efficient to care for those in need than not.
• I have two children with developmental disabilities and I am incredibly fearful for their future and what life looks like for us when they turn 18.  Their lives are important, they have much to contribute…but will they have the opportunity to do so?
• I have a daughter with special needs that received SSAH funding until she moved out into a group home.  I was a primary care giver and needed those funds!  It helped me integrate her into the community and gave me some much needed relief.
• It is shocking that a province as prosperous as Ontario would leave individuals with disabilities and their families waiting for crucial support. It is neglect, pure and simple, and contrary to the rights of these individuals to the supports they need to live freely and function as citizens in their communities.
• I am widowed person trying to support two adults with mental / physical disabilities on a very limited income.
• I have a son with autism, I need some one help me to take care of him, I can not go anywhere or take any time for myself because I can not find any one help me and I can not afford to pay for babysitter.
• As parent of an adult daughter with a severe developmental disability, I am keenly aware of how important it is for families to have uninterrupted funding in order to just keep our heads above water.
• The government seems to think us parents are going to live forever.  What happens to our kids when we can’t take care of them anymore?  Why do they keep cutting our funding which is so little to begin with?  What the hell is wrong with these people?  Do they really not care that much?  It’s pathetic.

These are just some of the comments people left who live in Waterloo Region. There are hundreds of comments from people across the province in the same boat. Please do what you can to build awareness on this issue.

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Below is the letter that I sent to Hon. Ted McMeekin, Minister of Community and Social Services, and to Hon. Teresa Piruzza, Minister of Children and Youth Services. If you are moved by this issue, I urge you to write you own letter, or even copy and paste mine. Even better, hop over here and sign the petition. It’s only through raising our voices together that we will get this made right.

Honourable Ted McMeekin, Minister of Community and Social Services

Honourable Teresa Piruzza, Minister of Children and Youth Services

Cc/      Honourable Kathleen Wynne, Premier of Ontario

Honourable John Milloy, MPP for Kitchener Centre

Andrea Horwath, Leader, Ontario NDP

Cheri DiNovo, Critic for Community and Social Services

Monique Taylor, Critic for Children and Youth Services

Tim Hudak, Leader, PC Party of Ontario

Toby Barrett, Critic for Community and Social Services

Jane McKenna, Critic for Children and Youth Services

Dear Minister McMeekin and Minister Piruzza,

I am writing to you today in regards to funding and services for Ontarians with developmental disabilities. I am not writing to you as a parent or family member, or as someone who works specifically with individuals with developmental disabilities, but as a concerned citizen who recognizes the connectedness of society, and sees a segment of the population being left behind.

I have been hearing stories lately throughout the community about families facing significant strain due to a lack of funding and services for their child, or adult child, with developmental disabilities. I have heard of families needing to hire caregivers – up to an additional 40 hours a week – out of pocket, going into significant debt to do so. Some need to quit their jobs; some could lose their homes.

As I started to research the issue, I found that changes over the last several years to the way that funding is provided has created significant upheaval for many families. Special Services at Home (SSAH), which once followed the individual for life, no longer does so. Families benefitting from the SSAH are getting significant jolts as their children turn 18 and fall into deep system gaps.

As of April 1, 2013, at age 18, as the programming shifts from one ministry to another (Children and Youth Services to Community and Social Services), families need to reapply for service. At this point some people are being told that the original assessments which made them eligible for SSAH as children are no longer valid, even though the disability hasn’t changed. Vulnerable families have to pay out of pocket for new psychological assessments, costing thousands of dollars. These costs are significant for a middle-income family; for a lower-income family they can be impossible.

Should the new assessment make the individual eligible for ongoing SSAH or Passport funding, they are then entered onto a waiting list for service. This is where significant hardships can begin, as families who once relied on SSAH supports are now adrift, waiting to resume service. Parents whose employment was possible due to SSAH supports are suddenly without supports and needing to restructure their families. They may need to stop working altogether to care for their adult child. What then happens to the family income, and with that, their financial health, security, etc.?

The waiting lists that people find themselves on are daunting. I have been told that the waiting list for a child to receive service through SSAH can stretch to 5 years – which seems even longer now that they are losing this funding at age 18. I have been told about 1-3 year waiting lists for Passport funding. What’s worse, I understand that the waiting lists are growing.

There simply isn’t the money in the system currently to provide services for all Ontarians with disabilities. But what are the economic costs of not providing service? What are the economic costs of families exiting from the workforce to care for their children, perhaps entering poverty if they weren’t there before? What are the societal costs of having a significant portion of the population without the support that they require to reach their potential and engage with the community?

I am very cognizant of Ontario’s financial situation and the multiple pressures of the provincial budget, but supports for individuals and families with disabilities are no place to skimp. It is unconscionable that in a province such as Ontario, families are losing homes, having to quit jobs to care for their adult children, and that individuals with disabilities are without the supports they need to thrive and engage fully with their community.

In hard numbers, what does the current wait list situation look like? According to Community Living Ontario, there are 7000 families on the waiting list for SSAH, and 4000 more on with waiting list for Passport funding. Community Living states that the current funding for SSAH “is spread so thin that the average allocation to families is $4,200 a year.  That translates into $350 per month or approximately 8 hours of support a week.” This funding, of course, is only for those who have made their way through a years-long waiting list.

In fact, there is very little movement in the SSAH waiting list. According to the Auditor General, “as of March 31, 2011, there was a waiting list of almost 9,600 people who met the eligibility criteria but were still waiting for SSAH funding.” The number of eligible people on the waiting list for Passport funding has consistently been greater than the number of people actually receiving funding.

With our aging population, many seniors are spending their golden years providing primary care. Community Living Ontario, through a random sampling of ridings across Ontario, found that over 1,450 parents over the age of 70 are still providing primary care to their adult child or family member. “80% of parents are between 70 - 79 years of age, 17% of parents are between 80 - 89 years of age, and 3% of parents are over the age of 90.”

Not only are Ontarians with developmental disabilities being left behind other Ontarians, they are being left behind other Canadians with developmental disabilities. On April 22nd it was reported in the Times Colonist that Saskatchewan has cleared their waiting lists for people with intellectual disabilities:

“Saskatchewan Premier Brad Wall says the government has cleared a waiting list of intellectually disabled people looking for homes or programs….The government promised in 2008 that it was going to do more to help people with intellectual disabilities. Since then, it has spent $62.5 million in 41 communities on 75 new group homes and service expansions. Five hundred staff have been added to provide supported independent living and a day program has been funded to support private service homes and provide specialized supports.”

While our waiting lists for service continue to grow and families are falling further behind, Saskatchewan is investing in supports for people with disabilities.

The lack of support and service in Ontario is not only unconscionable; it also ignores the commitment Canada made to people with disabilities upon signing the UN Convention on the Rights of Persons with Disabilities. A couple of examples include:

• Article 19 – Living independently and being included in the community. Section B states: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” SSAH and Passport would fulfil this requirement, were people able to access them in a timely fashion. Waiting 1, 3, 5 years for these supports are counterproductive to preventing “isolation or segregation to the community.”
• Article 26 – Habilitation and Rehabilitation, section 1 states: “1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes: a) Begin at the earliest possible stage, (italics my own) and are based on the multidisciplinary assessment of individual needs and strengths; b) Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.” Again, I think it is obvious that our significant wait lists fly in the face of the spirit of this article.

Saying that we aren’t living up to our international obligations may seem to be an abstract statement, but what this means in reality is that our children and families are not receiving the supports they desperately need. We must do better.

Ontario’s Ombudsman has begun to probe this issue, and with good reason. You do not need to wait for his findings to make progress on this issue. I encourage you to begin today. Some initial steps would be:

• To allocate funds for the SSAH and Passport programs so that the waiting lists can be fully eliminated in the short term;
• Ensure that the funds that are allocated are sufficient to provide the supports that families truly need; and
• Stop cutting funding for SSAH at 18, or at least until people can transition onto Passport funding seamlessly (not onto a Passport waiting list).

I hope that you take immediate action on some of these suggestions, but I also hope that you take these suggestions with a grain of salt. As I said in the beginning of my letter, I am not writing on behalf of family or clients who have disabilities – just as a concerned citizen. There are so many people with disabilities, and their families, in our community whose needs aren’t being met, and whose voices aren’t being heard. I hope you will engage meaningfully with them to ensure that the services and funding offered are adequate to meet their complex and individual needs to lead meaningful lives where they can fully engage in the community.

I look forward to your response.

Sincerely,

Cameron Dearlove

Again, I hope you will join me in signing the petition for full, uninterrupted SSAH and Passport funding.

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All this conspires to create a generation on a slow march to senior poverty.

This is the subject of my latest editorial.

“Tuition is eating our retirements” – Kitchener Post, April 11, 2013

The Ontario government recently lowered the maximum annual increase of tuition to 3 per cent over the next four years, instead of the previous 5 per cent.

The lower cap is very minor progress considering inflation in Ontario last year was only 1.4 per cent; Ontario already has the highest tuition in the country; this 3 per cent cap is an average, meaning some tuition fees will rise faster; and fees for graduate and professional programs have an average cap of 5 per cent. Before this plan is finished, average annual tuition will reach $8,000.

And I thought I had it rough a decade ago.

Public concern with the rising cost of tuition is usually around its effect on affordability for middle- and lower-income students. Higher tuition creates more of a financial and psychological barrier for our youth.

But rising tuition isn’t only creating a barrier in the first stage of adult life; it’s creating a barrier in the last. For many in Generation Y, it’s feeling like tuition is eating our retirement.

Click here to read the full article.

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That’s how long it would take to drive from the Prime Minister’s home at 24 Sussex to Victoria Island where Chief Theresa Spence of Attawapiskat is on hunger strike for a meeting with Stephen Harper.

As many Canadians across the country, including the Prime Minister, sit down to a Christmas feast, Chief Spence will be on day 15 without food, camping out on this island in the Ottawa River, waiting for a meeting.

When Chief Spence called her hunger strike she said that she would be willing to die for her people, and after over two weeks of fasting, her resolve seems unshakeable. So too seems the resolve of the Prime Minister to pretend the hunger strike isn’t happening.

On December 21^st, as Indigenous people and non-Indigenous people across the country gathered in solidarity with Chief Spence under the banner of the “Idle No More” movement, the Prime Minister took the time to share a video on Twitter from The Simpsons, with the caption: “Mmm… bacon.” It’s tough not to see this juxtaposition as symbolic of Indigenous and government relations under Harper.

Why meet Chief Spence?

Should the Prime Minister of Canada meet with anyone who demands it? No, that wouldn’t be an effective use of time for the head of government. But Chief Spence isn’t just anyone. She’s the chief of a community that has become symbolic of the problems of poverty and poor living conditions common amongst reservations across the country.

Attawapiskat became a black eye for Canada last year when the Chief called a state of emergency over a housing crisis in the community, and the Red Cross was called in to make up for the government’s inadequate response.

Just as shameful as the conditions in Attawapiskat was the government’s reaction, to dither and deflect blame back onto the community itself. A PR war was waged as third party management was called in. The message was simple: we’ve done and spent enough. If there isn’t adequate housing, it must be because of mismanagement.

Then Chief Spence took the Harper government to court over their imposition of third party management in her community – and won. The courts called the government’s implementing of third party management “unreasonable.”

Spence knows firsthand the impoverished and unacceptable state of so many Indigenous communities in Canada. She likely has ideas on solutions. She wants to start a new dialogue with this government, despite the way she’s been treated by them. Through incredible bravery she’s taking a stand to try to force the government into dealing with problems faced by Indigenous people, which would mean fulfilling the government’s responsibilities. One would think they would be eager to get to work.

So far the response from the Prime Minister is silence towards a woman starving herself for dialogue. The gap between 24 Sussex and Victoria Island, while only a few kilometres, seems like an ocean.

Bill C-45

The Idle No More movement sprung out of protests towards Bill C-45. C-45 has been passed, and the movement seems to have taken on a larger fight: not just dialogue, but action from the government to respect treaty rights and live up to its obligations.

Bill C-45 is an omnibus budget implementation bill. As has become the Harper government’s style in recent budget bills, C-45 makes sweeping changes to a variety of laws, avoiding debate on specific issues by sweeping sundry changes under the umbrella of the budget. Indigenous protesters rose up to express opposition to changes to the Fisheries Act, the Navigable Waters Protection Act, and the Indian Act.

Section 35 of the Constitution obliges governments to consult meaningfully with Aboriginal people on anything that would affect their way of life. Would reducing protected waterways from 2.5 million lakes and rivers to 82 affect their way of life? Would changing the rules around decision making for leasing reserve lands affect their way of life?

Where was the consultation?

The best hope

Idle No More has rallied Indigenous people across Canada unlike any movement in at least a generation. Linked through social media, the protests stretch across the country (and in the UK and USA), and have taken many forms, from round dances in malls, to a blockade of a rail line, the closing of streets, and marches, such as the one in Kitchener on December 21^st.

This movement provides the best hope for a renewed relationship between Indigenous people and the government of Canada since the Kelowna Accord, which was scrapped by the Harper government. Idle No More was sparked by the government’s passing of Bill C-45 without consultation, but it’s become so much more.

Idle No More leaders say Bill C-45 tramples treaty rights. This isn’t simply a protest against the status quo – it’s a protest against future erosion of an already unacceptable status quo. After years of having treaty rights ignored, we are seeing a resounding call to action.

Many people from all political stripes have asked me, as someone with an interest in both politics and Indigenous people and culture, what the solutions are for impoverished communities like Attawapiskat. I’m always disappointed by my answer: I don’t know. I have ideas, but no all-encompassing answer.

But I’m not sure if any single person has all of the answers. That’s the nature of complex challenges – they require people to work together towards complex solutions. Working together is precisely what this government has failed to do with Indigenous people in Canada. And what is the result of years of ignorance? We have people across the country flooding streets, blockading rail lines, demonstrating in malls, saying that they cannot be ignored any longer.

Complex challenges require dialogue – so let’s begin there. This country is so overdue.

An 8 minute drive is all it will take to get that dialogue started. And it just might save a life.

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The messages given to the public by governments, health associations, and health workers are heavily influenced by the ways in which health issues are understood. Contrast the two sets of messages provided below. The first set is individually-oriented and assumes individuals can control the factors that determine their health. The second set is societally-oriented and assumes the most important determinants of health are beyond the control of most individuals. Which set of tips is most consistent with the available evidence on the determinants of health?

The traditional 10 Tips for Better Health

1. Don’t smoke. If you can, stop. If you can’t, cut down.
2. Follow a balanced diet with plenty of fruit and vegetables.
3. Keep physically active.
4. Manage stress by, for example, talking things through and making time to relax.
5. If you drink alcohol, do so in moderation.
6. Cover up in the sun, and protect children from sunburn.
7. Practice safer sex.
8. Take up cancer-screening opportunities.
9. Be safe on the roads: follow the Highway Code.
10. Learn the First Aid ABCs: airways, breathing, circulation.

The social determinants 10 Tips for Better Health

1. Don’t be poor. If you can, stop. If you can’t, try not to be poor for long.
2. Don’t have poor parents.
3. Own a car.
4. Don’t work in a stressful, low-paid manual job.
5. Don’t live in damp, low-quality housing.
6. Be able to afford to go on a foreign holiday and sunbathe.
7. Practice not losing your job and don’t become unemployed.
8. Take up all benefits you are entitled to, if you are unemployed, retired or sick or disabled.
9. Don’t live next to a busy major road or near a polluting factory.
10. Learn how to fill in the complex housing benefit/asylum application forms before you become homeless and destitute.

What an excellent and creative way of explaining the way our society – and our socio-economic place within it – determines our health outcomes.

Now imagine if we saw poverty prevention and elimination as a means to save on health costs.

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Below is the text of what I plan to say to Council.

To Region of Waterloo Council,

Thank you for hearing me out today.

I would like to address you on the issue of the cuts to Discretionary Benefits.

I am coming to you as a property tax payer and I am here to do the uncommon: I am inviting you to raise my taxes to save these benefits.

These cuts that came unexpectedly this year from the province are wrongheaded and show a lack of upstream thinking. They leave this council in a very difficult situation – this downloading is leaving the Region on the hook to pay for these benefits through property taxes, where they should be funded through income taxes. But these benefits are so vital I urge you to fill the void left by the province.

A friend recently came to visit me after spending the last two years doing development work in Africa. I was telling him about the province’s cuts to the CSUMB and Discretionary Benefits – he was shocked. “How can they cut these? What are they thinking? What are people supposed to do without them?”

He knew these supports well. He worked for several years in supportive housing here in Kitchener and helped hundreds of people through precarious housing situations. He saw firsthand, over and over, how these benefits helped people in vulnerable situations. Social assistance rates are so low that there is no way people would be able to pay for these supports on their own.

The social determinants of health tell us that the effects of poverty have profound and long-term effects on the health of individuals. Underfunding these benefits will have long-term social and economic costs for this region. The long-term costs will surely be greater than the savings the province is pursuing through these cuts.

I am passionate about our social profit sector, having spent several years working in social profit, and the last year analyzing and writing about the sector’s health and vitality. I don’t claim to be an expert, but my belief is that our social profit sector is already facing great strain through various cuts coming from multiple angles, and need that continues to increase. I don’t believe that this sector has the capacity to meet the increased need that we will see if these programs are underfunded. Where will the additional housing units be found? The additional shelter beds? Where will the Food Bank, St. John’s Kitchen, Ray of Hope, and others find the additional food needed to feed people who are struggling through greater levels of poverty?

In the Regional Survey community agencies said as much, citing concerns about strain on organizations and increases in services and clients; concerns that agencies will be less able to support individuals as fewer resources will be available; concerns about a domino effect that may occur as there will be less of a focus on prevention – again, no upstream thinking; and most of all, concern that participant health and well-being will suffer.

On the Discretionary Benefits Review Survey, I would like to applaud the Region for reaching out to service users and service providers in trying to determine the best way forward, but I also want to present some caution. My partner works in supportive housing and helped to distribute the survey to residents. She was very concerned about picking and choosing which supports are important and which aren’t. She noted that prosthetics was listed in the survey. She said: “this might not be the most common support that people seek, but ask someone missing a limb how important prosthetics are.” The report mentions the sentiment expressed by many: none of the current benefits should be eliminated in its entirety. To service providers they are called Discretionary Benefits, but to service users, they are Necessary Benefits.

Finally, I will say again that I don’t believe it should be your job to make up for these cuts; but that doesn’t change the fact that today, it is.

This Region has a history of strong funding for Discretionary Benefits, and earlier this year this council stepped in to fill the void left by these cuts for the rest of this year. In doing so you showed that you recognize the importance of these benefits, and you also carried on a tradition of compassion and generosity that makes this Region so special. Today I ask you to not forget this tradition.

Please, do what you can to find room in the budget to fully fund these benefits, and if necessary, as a tax payer, I give you my blessing to raise my taxes to meet this need. These benefits are too important to let drop.

~ Cameron Dearlove, Kitchener Resident

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